Our daughter Francis was born in December 2017, two months early and suffering from a set of complex congenital conditions; Tracheo-Oesophageal Fistula, Oesophageal Atresia and Tracheomalacia, requiring surgery and impairing her ability to eat and breathe.
My husband Stephen flew with her on the night she was born to the Trevor Mann Neo-natal unit in Brighton. We then spent the next eight months between there, the Royal Alexandra Children’s Hospital and Great Ormond Street Hospital (GOSH). We return to GOSH regularly for treatment and will do for the foreseeable future.
Having a child with a severe illness feels a bit like being ship wrecked. Suddenly the life you knew is gone and the hopes and dreams you had for your child’s future seem to drift further away with each new detail of their diagnosis. You measure your child’s progress, not with milestone cards and the ubiquitous Instagram posts, but with tiny incremental weight gain, fluid balance and SATS levels. When we finally came home, we realised that the hospital, in part at least, has to come with you and that further admissions, procedures and treatments will be the norm for a while.
FNHC were there for us from the minute we returned, but their care was stepped up when we’d been back a few months and she suffered respiratory arrest at home. This is part of her condition and had happened in hospital months before, but to experience this at home and nearly lose her was devastating, and reinforced how vulnerable she still was. From that point on Francis’ condition was considered life-threatening and she was moved to the Palliative Care Pathway, with escalated care and respite. The increased support and knowing someone else understood her condition and the possible consequences was so important.
Stephen and I are delighted to have the opportunity to say thank you, we didn’t know what to expect when we returned and having only ever been in hospital with her, were anxious as to how her specific needs would be met, we needn’t have worried; we have had the utmost care and support from everyone we have been in contact with at FNHC.
Francis has a two hour visit every week from the FNHC team. Francis loves them all and her face lights up when she sees them. We also receive support and guidance as required with things like medication, tracking her weight gain, helping to change her gastrostomy, checking in on her when she’s been ill and providing welcome advice when we’re concerned.
Crucially to know that in a sea of worries, there are some things that you can trust are being dealt with care and attention on your behalf is priceless. To have that level of support in the Island can take some of those worries away and allow us more time to be Mum and Dad, and spend a little less as carers. We lost so much of that in the early months, so anything that gives us more time with her is precious.
And as for little Frankie - who currently is only concerned with the whereabouts of her precious toy Bear and when The Clangers are coming on, we’ll make sure that when she a bit older, she fully understands how much help we have received and that she says a big, heartfelt thank you too.